For this clan, Mother's Day is family affair
By ROBERT KING
© St. Petersburg Times, published May 13, 2001
BROOKSVILLE -- Motherhood isn't always easy, but Paula Maxwell's version of motherhood may be tougher than most.
Maxwell, 58, has five children still living with her at home. And she knows they will never leave, at least not while she's alive.
That's because the five children under Maxwell's roof are profoundly handicapped and unable to care for themselves. All of them wear diapers. Four are fed through stomach tubes. Three don't walk, and the other two walk only when led by the hand.
And Maxwell adopted them all.
In fact, over the past 25 years, Maxwell and her husband, Ed, have welcomed 39 profoundly handicapped children into their family -- all through adoptions, foster care situations or periods when the Maxwells ran a group home for the disabled.
A 40th handicapped child -- the one that got the Maxwells interested in opening their home to begin with -- was their birth daughter, Tracy.
Injured in a swimming accident as a toddler, Tracy lived another 5 years in a coma. Doctors told the Maxwells they should think about giving their daughter over to a nursing home. Paula Maxwell wouldn't hear of it.
"(Tracy) didn't ask to be that way," Maxwell said. "I couldn't pawn her off on somebody else." But the experience opened her eyes to the plight of profoundly handicapped children. "I noticed the really severe ones are left behind in nursing homes and institutions."
Even before Tracy's death in 1977, and with the consent of their other four biological children, the Maxwells began to open their home. Living in St. Petersburg at the time, they sometimes had as many as 13 handicapped kids in their care. Mostly, the number hovered around eight.
Part of the territory that comes with caring for kids in such frail health is watching some of them die. In all, 13 of the 40 children have died, including some who died after leaving the Maxwells' care.
One of the children who came into the Maxwells' life was a boy named Terry who was born with most of his brain missing. He wasn't expected to live past age 3. With the Maxwells, he lived until age 12.
Paula Maxwell has tried to put the children's mortality into perspective.
"The deaths were hard at first. But later on I realized I had done everything I could, and I had a clear conscience," she said. "All you bury is the child's body. The child is in heaven, because it never did anything wrong. And (the body) was what was holding it back anyway."
The Maxwells moved to Hernando County in 1996. They live in a small house on Pine Ridge Drive in eastern Hernando County.
Of the five adopted children now in the Maxwell home, three were abused at an early age. Christopher, 17, and Nicole, 16, were shaken babies. Edwina, 19, was an infant when she suffered a debilitating brain injury at the hands of an abusive mother.
Today, Edwina knows only that she has a "boo-boo" in her head. Despite her difficulties, she flashes a disarming smile that brightens any room. That includes her classroom at West Hernando Middle School.
Matthew, 24, has been with the Maxwells since he was a year old, longer than any of the others. Even though he was born blind, deaf and mute, Matthew went to school as a child. He even graduated from Central High School with a special diploma.
It's evident, as Maxwell gently brushes his hair with her fingers, that she has a special fondness for her eldest baby.
Paulene, 21, was born with cerebral palsy, a brain disorder that inhibits muscle control. With a mile-long stubborn streak and a tendency to throw tantrums, she is her mother's greatest challenge. Recently, she spat milk into her mother's face.
"I can understand that she is frustrated being locked up in that body," Maxwell says. "But she's got to let me take care of her."
For the most part, the cries and wailing of her children are a mystery to others. But Maxwell has learned to translate which cries stand for pain, which are for discomfort and which come from boredom.
"It takes the patience of a saint," said Virginia Maxwell, Paula's daughter-in-law and a teacher at West Hernando Middle School, where Nicole and Edwina are students.
The family's home, about 4 miles east of Brooksville, is dominated by the trappings of caring for severely handicapped children.
Along with the wheelchairs, the house is crowded with three chest-high stacks of formula for tube-fed adults. There are stacks of adult-size diapers. And there are shelves and tray tables covered with medicines.
Paulene and Edwina share a bedroom decorated with Barney sheets and a moon-faced wall hanging. Nicole, Matthew and Christopher have beds in an open room in the center of the house.
For Paula Maxwell, life is a non-stop flurry of care.
The day revolves around meals, diapers and maneuvering the kids from bed to wheelchairs or -- perhaps -- a swing in the front yard. Some of them enjoy television. Paulene, for example, is an avid soap opera fan.
At night, Maxwell is out of bed almost as much as she is in. She has to check on Edwina to make sure she isn't having a seizure. She also looks in on Matthew to make sure he isn't hitting himself in the face, an occasional, almost involuntary habit he has developed.
Ed Maxwell gets up several times himself to do some checking, too. And he is heavily involved in the care of the children. But, having undergone one knee replacement and needing another, he is disabled himself.
Until recently, the family enjoyed the help of an aide who spent 100 hours a week in the home. But the aide recently injured an ankle, and the difficulty finding a replacement has put things almost entirely on the Maxwells.
Already, mind-freeing time out of the house was precious to the Maxwells. And vacations are almost unheard of. Such endless caregiving -- which includes a good bit of lifting -- has taken its toll. Paula Maxwell says she has developed a deteriorating disc in her back and carpal tunnel syndrome in her hands.
Looking ahead to the inevitable, the Maxwells' daughter, Ludwina Maxwell, now 38 and with children of her own, has agreed to take care of her disabled siblings should anything happen to her parents. It's a role she played as a teenager and periodically ever since.
"Even though they are handicapped, they teach you things you wouldn't imagine -- to love unconditionally, to trust unconditionally and to be patient," Ludwina said.
For now, the Maxwells are proceeding with the construction of a new, more spacious home that will make their jobs easier. It will be equipped with electronic doors and tracks on the ceiling that will, with an attached harness lift system, enable the Maxwells to easily move their children from one room to another.
Medicaid, which helps the family make ends meet, is covering the cost of the special features.
Looking back on her unusual journey through motherhood, Maxwell says she wouldn't change a thing.
"I thank the Lord every day," she said. "I have live dolls to play with. They don't talk. They don't get into anything. I don't have to chase them."
So, even though Mother's Day promises to be as busy and challenging as any other day, Paula Maxwell has no regrets.
With a nod to Edwina, who looked at her mother with adoration after being given a snack, Maxwell said: "Look at the smile on her face. That's all the thanks I need."
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